Henoch-Schonlein Purpura--Share Your Experiences, Please

My younger child has been recently diagnosed with Henoch-Schonlein purpura. So we’re bolted in for the ride. I have been rummaging around the google, but people are still a better source of relevant info in many cases.

I am curious about what we can expect in re various sorts of pragmatic day-to-day issues, etc.
Do all of the symptoms remain more or less constant for the duration? Or do some start to dissipate before others?
What kinds of non-drug comforts may be helpful?
What kinds of drugs might we want to avoided?
And other questions I haven’t thought of or written yet.

The poor little guy has us carrying him from room to room because he hurts too much to walk.

ftr, we have a Dr involved and I am consulting a dear friend who is a nurse practitioner. So I am not exactly seeking medical advice so much as dealing-with-it-advice. But pertinent medical advice is also very welcome.

It’s a pretty broad range of possible courses but most do very well, usually resolving on the order of weeks. I’ve had patients who have had recurrences weeks to months later but those have always been less severe than the first episode and more do not have them than do. The most recent case, just last week, showed up primarily with the scattered bruising waist down aspect of it with minimal leg and abdominal pain and a clear urine and was resolved at the one week mark - the fastest I’ve ever seen. There is no clear linear progression to symptoms occurring or disappearing. Your docs will want to make sure the kidneys stay okay and if some blood or protein does appear in the urine samples that it then goes away on follow-up. Barring the very very very rare intestinal blockage complication (intussuception) the kidneys are the only potential long term concern. And when they are affected they usually recover well too.

Not much to do other than to give some comfort meds and carry him when you must. Steroids are best avoided except in some very particular exceptional cases. They might cause more harm than good.

For the TMs Henoch Schönlein Purpura (HSP) is a condition that causes blood vessel inflammation mostly in the lower half of the body mostly in younger kids, especially around 4 to 7 years old. It can cause any of belly pain from inflammation of intestinal blood vessels, to swelling over (but not usually in) lower extremity joints with leg pain, to impaired kidney functions, and classically includes a bruise like rash scattered from the waist down. Some have all, some have just the rash. Probably some have just the belly but we never know to label it different than a multitude of other unnamed causes of belly pain … the rash is what stands out as pretty specific.

Thank you DSeid.
Anyone have info on baths–as in very warm v tepid? And the same Q in re ice packs v heating pads?

I know that for injuries, it’s generally cold at first then later heat. But for this kind of inflammation w/o injury, is one more likely than the other to bring some relief?

I’ve never “met” anyone else who’s been through this. My daughter had it in 2nd grade, following a respiratory infection. She had quite a lot of abdominal and joint pain and actually spent one night in the hospital. I though it was sweet that the hospital assigned someone to stay in the room with us - later I learned it was probably because they suspected abuse! The huge purple welts on her legs were awful. I spent hours just tickling (light fingertip caressing) her back, and she liked me to massage her tummy.

She was fine within a few weeks. She missed about a week of school and then when she did go back she used a cane to walk and she was allowed to go to the nurse for pain medicine once a day. She also got some relief from TUMS. (whether or not it was placebo relief I don’t know).

Thank you, Lightlystarched. I appreciate it.

Relief from tummy/gut issues? Or relief from something else?

Did you daughter get better and then get worse and better again?
Or, once she started getting better, did she just keep getting better?

I had it when I was four or five (1970) so I don’t really remember much about it. My mom thought I was going to die and I did spend some time in the hospital (maybe a day?)

I guess I came out of it ok as I’m still alive with no visible or lasting effects. Well, there is one issue: to this day my brother is still jealous of the “Sunshine Box” I got from the church. So make sure if you have more than one child that each one gets a Sunshine Box or there may be problems for years afterwards :slight_smile:

I do remember that I would get better and then go run around and get sick again. How do you keep a five year old boy from playing and running around?

I asked a doctor not too long ago and he said that HSP looks a lot worse than it is but I have no idea his experience with HSP.

The TUMS seemed to help her with the abdominal pain. But like I said it may have just helped her mentally, you know? She also took oatmeal baths.

Yes, she did cycle through recovery.

She’s always been my kid who seems to get more infections and illnesses. She’s had her adenoids removed and she has a little eczema now. She’s also the kid I breastfed for 3 years, so no extra protection there, lol. We just assumed that her immune system is a little slow coming online. My older daughter has never been sick a day in her life.

I wanted to add something - my daughter always seemed stuffed up as a toddler, and she was a mouth-breather at night. She even softly snored a lot. Getting the adenoids removed cured her of that, but I’ve wondered if the respiratory issues and then the HSP following a respiratory infection were related.